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Tuesday, March 10, 2009

Honorees

Meet the courageous individuals who live with these devastating diseases and are excited to cheer you on all the way to the finish line!

What is an Honoree?

An Honoree is someone who provides inspiration to our athletes throughout the training and fundraising period. Honorees serve as symbols of strength and motivation, support and determination. An Honoree is someone who is currently being treated for Crohn’s disease or ulcerative colitis.

Each of our Team Challenge participants is matched up with an Honoree. Honorees have the unique opportunity to connect with individuals who have committed themselves to raising funds for the fight against Crohn’s disease and ulcerative colitis. They will share their strength and courage with participants who are training to complete their endurance event.

When participants join Team Challenge, they commit to many months of training and fundraising before completing a half marathon. They are not only motivated by their own personal fitness goals, but are truly inspired by the bravery and fortitude of each Honoree.

Meet our Honorees!

Jillian Winchell

Jillian’s mother writes: Jillian, 10, has been dealing with IBD for about five years. When she was going into kindergarten she was constantly complaining of abdominal pain. I just thought she didn't want to go to school. Every day she would cry about her pain, and everyday I would tell her she had to go to school. I finally took her to see a gastroenterologist, Dr. Brady. The first thing she did was lab work, then an upper and lower endoscopy, which showed colitis.

Jillian was started on medication, and she slowly started feeling better. We, as a family went through her highs and lows, while she was on steroids. When she was on the steroids she would get mean and violent. She would try to hit her older sisters, when she was frustrated, or mad. It was hard to try to explain it all to a 9 and 12 year old, not to mention to Jillian. We all had to take it one day at a time.

Last year in late September, Jillian started complaining of joint pain. Dr. Brady sent her to a pediatric rheumatologist, After more testing she was diagnosed with arthritis. The rheumatologist said this could be related to the IBD. She was put on another medication to help with the joint pain, and continues to take the medications for the IBD.

Jillian has had long stretches of time, when she feels great, she will have occasional abdominal pain, and diarrhea. Then there are other times when she can think of nothing else but how much her stomach is hurting, and how many times a day she goes to the bathroom. Through out it all, Jillian continues to play sports, softball is her favorite, she loves the Cardinal Baseball team, and Albert Puljols is her hero. She struggles sometimes with being at school, and her classmates wondering why she has to go to the bathroom all the time. Jillian just tells them she has stomach troubles, but always feels weird about it. She has kept her grades at a B average, and we are very proud of her.

We sent her to Camp Oasis for the first time 3 years ago, which was the best thing we could have ever done. She got to be around kids that had the same problems with abdominal pain, and diarrhea. She felt more normal than weird. She continues to grow, and always knows there are people out there that are worse off than she is.

Karen Guglielmo

This year, you might have a difficult time tracking her down between traveling to Florida, California, Hawaii, Rome and perhaps Australia, hiking county and state parks, and singing with a nine-piece band, but last year you could count on finding Karen Guglielmo in the hospital suffering from surgical complications due to Crohn’s disease.

Karen is the Crohn’s and Colitis Foundation’s Honored Teammate for the Kona, Hawaii, and Napa Valley, Calif, CCFA Team Challenge teams and knows what a challenge Crohn’s disease can be. She was diagnosed with Crohn’s disease in 1985, giving her 24 years of experience dealing with the various challenges inflammatory bowel disease presents. As a seventh grader trying out for the basketball team, Karen began having abdominal and joint pain, weight loss, and extreme fatigue. After several misdiagnoses, including “growing pains,” she was referred to Dr. Joseph Fitzgerald, a pediatric gastroenterologist at Riley’s Hospital for Children in Indianapolis. She was immediately diagnosed with severe Crohn’s disease following blood tests and a colonoscopy. Within the first six months of treatment she had her first bowel resection.

Junior and senior high school were a combination of steroids, surgery and show choir. Her classmates didn’t understand why she went from 100 to 160 lbs in the span of a month. They didn’t understand why she was gone from school for long periods of time, or why she got to leave the classroom without asking. When she was able to attend school, she participated in every non-sport extra-curricular activity she could find. She studied hard, and when she was hospitalized, several teachers and even the GI staff that took care of her tutored her. She graduated with a 3.975 grade point average and an ileostomy.

Study at the University of Illinois in Champaign presented similar challenges. Starting and withdrawing from school a half dozen times due to flare ups, obstructions and ultimately four more collegiate surgeries, she took a break from school in 1996 to get married. She and her husband, Jim, moved to Southern California, where she worked for a contract agency at McDonnell Douglas (now Boeing) ultimately as a graphic design project manager. It was when they moved back to the Midwest in 1998 that Karen’s Crohn’s disease reared its ugly head again.

After having another surgery, Karen started working with Dr. Joshua Korzenik at Washington University School of Medicine. She had tried steroids and immuno-suppressants, 5-ASA’s, and some nontraditional therapies as well, but Remicade seemed to be the answer. Remicade provided Karen with her longest remission since her diagnosis, seven years free of pain. She went back to school at the University of Missouri-St. Louis and completed her Bachelor’s degree in Economics in the winter of 2000.

Remicade had its limits, however, and she developed yet another obstruction in 2005 that required additional surgery. By now, Karen was running short on intestine! After another obstruction and resection in 2007, Karen only had approximately three feet of intestine left; no colon, no rectum. She began treatments for Short Gut Syndrome, which required a centralized IV in her chest through which nutrients were infused. Though she could eat, her intestines did not absorb enough calories from her food to sustain her. She also started Humira to keep her Crohn’s disease in check.

Last year she had yet another operation for obstruction, which had its own set of complications, resulting in a second surgery in October. Between a vascular necrosis (blood vessel death) of her left hip due to early and prolonged steroid use, angioplasty and stint placement due to scarring caused by her central IV ports, and ten surgeries, it would seem that there was little hope for a positive outcome for Karen.

But Karen found hope in the support that was abundant in her family and friends, and particularly in her best friend, Jim. She found humility in the dedication of high school teachers that drove the two-hour each way trip to spend an hour teaching her what she was missing in the classroom. She found inspiration in the children and adults she has had the privilege to serve as a volunteer and employee of CCFA. She was awed by God’s influence in her life. Every time she was hospitalized she met someone who was so much worse off than she that she was able to see Crohn’s disease as “doable” and her experiences as something she could use to help others. Every time one medicine failed, there always seemed to be a new medicine that became available. She saw the evolution of surgical treatments that salvaged the little intestine that she had left. She marveled at the miracle of an IV that allows her to stay nourished and hydrated so she can climb mountains and see the world.

And she is able to see hope in the future today because of the research that CCFA funds, which will inevitably find the cure for this disease.